Category: first hand experience

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. After suffering a brain injury it is inevitable that your life will be changed. When I say this I am talking about changes perhaps in your cognitive ability, in certain physical abilities or in the way that you look at life.

The one thing you should ensure never changes, is who you are as a person. After I suffered my injury I found that the majority of my desires, passions and drives remained similar to what they were before it. Six years later, I am still working towards achieving the goals that I set myself post-ABI and slowly but surely, I am starting to get there. With persistence and determination, and just as importantly, by staying true to yourself I firmly believe you can achieve anything you set your mind to. With that statement in mind I will also share with you some of the things I have learned as I have made progress.

Nobody Knows You Better Than You

This is one of the key things you must continue to tell yourself. Off the back of a brain injury there will be plenty of people who think they know you better than you know yourself. They will think they know what you want, what is best for you both in the short term and the long-term, and in some cases they may even place a glass ceiling above you. What I mean by that final point is that often due to the issues that we struggle with as a result of our injuries, people seem to have placed limitations upon what we can achieve. A maximum expectancy, if you will. This is one of the things that I have struggled to cope with since my injury, the lack of belief people seem to have, peoples assumption that I deem it appropriate merely to “settle”.

I will give an example if I may. I am currently, as I have mentioned in previous posts, living at home with my parents. This is purely due to a combination of my epilepsy and the effects of my brain injury, which make it not only impossible but also dangerous for me to live on my own. The lack of independent living is not from a lack of trying. I have worked Jobs before, as well as living independently both in London as well as in my hometown in Dorset. After I came home from the year in London and I got settled in my new flat in Dorset I returned to the job I had been working before I moved, working as a waiter. A month or so after my return, I had an appointment with my neurologist to assess my progress. It was at this meeting when he suggested that perhaps it was time to stick to the waiting job and see how things went.

The point I’m trying to make with this example is that purely because you’re struggling with things, it does not mean you have to settle for life that you’re unhappy with all that is beneath the expectations you set for yourself. You know what you are passionate about, you know what you want today and most importantly you are aware of your own abilities and how far those abilities can take you. Nobody knows these things better than you so do not allow anybody to presume that they do. That goes for friends, family and doctors. While their advice is important and most likely well informed, they cannot possibly know what is going on inside your head.

Don’t Just Consider The Here & Now

The terrible circumstances of suffering a brain injury certainly dictate some of what we do in here and now. Unfortunately, that is inevitable. Not only do we live with the physical and mental consequences of the injury that causes problems each and every day, but also it can force us into circumstances that we did not foresee.

If, at the age of 18, somebody had asked me where I would be when I got to the age of 26, I certainly would not have said living at home with my parents in a cramped two bedroom house. However, these are the circumstances that I am in. The only way to overcome the challenges that we face and improve our circumstances, is to persevere: to get up each and every day and carry on. It took me along time to come to terms with this fact; that any progress I was going to make was going to be gradual. If you can accept these things and, as I have said in previous post, even embrace them with a positive mindset, you can go along way to insuring that what you see as a negative circumstance right now, will not affect who you are and can even be turned into a positive circumstance further down the road.

The other approach to enduring the negative circumstance is to allow anger, self-pity, and frustration to take hold of your entire being. The result of this, and I speak from experience here, is that you fall down into a dark hole of despair. For some people there is no coming back from this. So focus your energy on remaining positive and trying to look for the good things in your circumstances, because they are there and the more you focus on the positives (i.e. what you do have as opposed to what you don’t have) the less chance there is for the negative thoughts to take hold and take you to place you can’t get back from.

Things Will Get Better

It is one of the things that are really difficult to deal with on the road back from a brain injury: that progress is slow. What the above post has been trying to say, is that we always need to stay calm and think clearly. While it is in the human nature to seek instantaneous results, that is almost an impossibility with something like an ABI. To be more specific, the point I’m trying to make is that throughout the recovery you should always try, as best you can at least, to stay true to who you are. I do not believe that a brain injury dictates every facet of your life. Nor do I believe that it changes every aspect of your personality. I consider myself a person who is that different now, than the person I was before the brain injury (perhaps a little more mature and a little less naïve). You certainly should not give up on the things that make you an individual and I firmly believe you should continue with trying to achieve similar goals to the ones you had before your injury. Because the truth is, you can!

My name is Tom; I am 26 years old and the survivor of an Acquired Brain Injury. Last time out, I approached the subject of returning to work after suffering a brain injury. It was only when I reach the end of the post that I realized all the advice I had given was really regarding all of the preparation needed before actually applying for a job. So here I am returning with the second part of that blog post, hoping to give you some more concrete advice directly related to the job market for us people suffering from ABI’s.

Being Honest With Yourself (Again!)

This may seem like a fairly obvious point but the job you are applying for must have a fair contract for somebody with a brain injury. All of the issues we deal with must be taken into account when applying for a job. One of the obvious ones to use as an example would be working hours. The majority of brain injury patients are unlikely to be able to work full time hours the same as everybody else. I say this not to generalize but to speak from experience. Ever since I suffered my brain injury fatigue has been a problem for me on a daily basis. As such, any jobs that I now apply for are either part-time or flexi-time. This piece of advice relates strongly to the last post, in particular the section about being honest with yourself and honestly assessing your abilities.

Similarly, if you have difficulty (as I still do) with large crowds, then it is not advisable to get a job working behind the bar in a nightclub. Much of this is common sense really and I’m sure that you are all sensible enough to know this without me telling you but I just thought it was something that should be brought up. What I am basically saying, in short, is to play to your strengths when you apply for work.

Being Honest With Your Employer & Co-Workers

The issue of honesty is an important one in any working relationship, even more so when one member of the workforce is dealing with a disability. If you are starting a new job post-ABI, it is vital that you make your situation clear to both your employer and your co-workers. As brain injury patients, we must overcome many issues in life that most people do not have to deal with. It is unfortunate, in this day and age, that overcoming prejudice in the workplace is one of those issues. However, in my opinion, this can never be achieved without 100% honesty on your part. Building a foundation of trust and honesty will go a long way toward overcoming it.

It is also important to remember that being upfront with your colleagues will most likely benefit you in the long run. People you are working with need to be aware of all the potential risks involved for you while you are in the workplace. For example, as a long-term sufferer of epilepsy, it is vital that my co-workers are aware of my health situation; know what to do should I have a seizure, and hopefully make allowances for the things I may not be able to or should not do. In the past, I have had seizures in the workplace and without members of staff trained in first aid, the outcome may well have been far worse than it was. Also, without sounding preachy, it is worth noting that if you suffer from something such as epilepsy, there is almost an element of responsibility to inform those you work with. I do not know if you have ever seen seizure but they can be very frightening things to witness. It is only fair to prepare your colleagues for what may happen while you are at work. I realise this will not apply to everyone, however I do know that epilepsy is a common consequence of a brain injury and it is a suitable example for me to give.

Pre-Existing Relationships

This is one of the first pieces of advice I would give to any brain injury patients hoping to re-enter the job market. Do your best to utilize any pre-existing relationships you may have in terms of employment. If you are still in touch with a former employer and you’re on good terms with them, it may be worth giving them a ring. Refreshing this pre-existing relationship can have many positive outcomes in terms of how successful you are while at work.

Firstly, if you have already worked for that particular employer, they will already be aware of what you can bring to the workplace and of your value as an employee. Secondly, having a job where you are on good/first name terms with the boss can only be positive with regards to your employer providing flexibility in the workplace to accommodate your health situation. And finally, this may seem like a simple one, when returning to work after an ABI I would suggest returning to work in an environment and with people that you are familiar with so as not to over stimulate your brain (potential consequences of this overstimulation run from fatigue all the way up to panic attacks and seizures).

Entrepreneurship

Finally, we get to the final heading of entrepreneurship. I will only keep this brief; as I’m not sure I know enough about it (yet). For some people after a brain injury the stresses and rigors of full time employment are not possible. It is all simply too much for them. So an alternative option is to perhaps start your own business. Think of something that you love, that you’re passionate about and would enjoy doing each day and then try to think of a way to monetize that passion. The bonuses of this (in the idealist thought pattern) are that you can arrange your own working schedule, pick your workload for the day and be responsible for all of your own business decisions. In some ways enabling you to get out of the rush and hurry of the world that is being employed by someone else.

Try Every Option

Sometimes it is difficult not to feel a little hard done by when, as a brain injury patient, you consider what you have lost. What we need to keep telling ourselves is that we are every bit as valuable as any fully abled person. We are hard working, friendly, driven and we have ambitions and goals as well. Only a positive attitude and hard work will overcome the rubbish hand we were dealt. It does not seem right that we should not get to pursue a passion in the work place because of sheer rotten luck. So my advice would be to try everything that you can and to go into it with an open mind. An opportunity, no matter how small, can always lead to something bigger and better. After all, that’s a place all of us are trying to get to, somewhere bigger and better, am I right?

Thanks for reading again. Please, follow me here on WordPress if you like what I am writing or find it helpful. To get more info on blog updates, follow me on my Twitter page (@ABIblogger). Thanks again and be well!

As I have stated before, staying positive and having a goal to work toward is a key part of the recovery process post-ABI. Whether they are small goals or big ones, having a sense of accomplishment and pride builds self-esteem and confidence to move onto bigger and better things. I firmly believe that most, if not all experiences, in life are as available to us as victims of head injuries as they are for any other person. We shouldn’t feel sorry for ourselves; we shouldn’t allow it to dictate our entire life.

In my opinion, what we should be doing is recognizing where it does have a significant impact on our lives and finding ways to work around these problems: finding ways to do the same things everyone else does while keeping the problems we have in mind and tailoring our actions and choices to suit our problems. Today I will be talking about education, specifically higher education at university and the pursuit of it. I will be coming back to further education in a later post. It should also be noted that I am giving a warning: the pursuit of higher education such as a degree is extremely difficult even for those who don’t have a brain injury. For us it is far, far, more difficult. So only pursue it if you are 100% sure you want to. Don’t let anyone else pressure you into doing something you don’t want to do.

Picking The Right Course

This is one of the vital elements of going back into higher education. Ensuring you have picked the right course will eventually impact on so many parts of your university experience. What may seem fairly trivial issues will have an impact on fatigue, morale, mental health, and issues with all of these things combined can lead to bigger problems on how you look after yourself in terms of diet, tidiness and so on.

Working Hours

One of the first pieces of advice I would give is to check the amount of hours a week the course has. It is important not to bite off more than we can chew. Over stimulating the mind can cause extreme exhaustion. When I was at university I always did my best to have a nap each day after my lectures to try and keep up with everything. It was a strategy that worked well for me and kept everything on an even keel. If you have days where you are in lectures for six or seven hours each day, for someone with a brain injury, it extremely unlikely that you will be able to manage all the other aspects of your life (particularly your health) and still be able to keep up on your course.

Examinations?

Another important thing to consider is the type of examinations that the course has. Most university prospectuses will include the type of examinations it uses on the course information page (each course being different depending on the subject). It is normally split into percentages, for example 40% coursework, 60% exam. The course that I chose, scriptwriting, was 100% coursework based. This was much to my advantage due to the problems I had in terms of committing things to memory. I would advise anyone looking at higher education to go for a course that is mainly written. The worst I had to endure was a timed essay where you are allowed to bring in notes anyway. Choosing a course such as this greatly improved my chances of success and turned out to be a good decision as I emerged with an upper second (2; 1).

University Resources

When applying for a course I should make it clear to anyone reading this with a brain injury, or in fact any disability, Universities have funds and professional staff with jobs specifically there to help you. Even with austerity being the word of the day in the UK, if you are persistent and determined enough, and you’re willing to wade through the bureaucracy then you can get help. Take me for example, after much persistence and staying on hold from my father, I arrived at university safe in the knowledge that I would have: a note taker for lectures, weekly meetings with an academic support worker to keep me on task with my workload, monthly meetings with the head of the disabled students department to ensure everything was going well, and weekly appointments with a councilor to ensure my mental health and wellbeing was up to standard. It was not just this; I also received en-suite accommodation, and was given a computer and software to help me maximize my potential (things such as voice recognition software and essay planning software), a Dictaphone to record lectures and weekly meetings with a technician who taught me how to use all of it effectively.

In terms of being able to access this support, a good place to start is with the institute’s student union. They can provide you with an abundance of information on where to start, who to talk to and so on, they can really set the wheels in motion.

It Can Be Done

As I continue to say, I refuse to let this injury define who I am. Part of the recovery process is reintegrating back into society that you are different from. I say this not to be mean or unpleasant, it is merely a fact. None of your friends know what it is you have gone through, the things that you have to deal with every single day. But part of that reintegration is doing the things that everyone else does such as going back to work or going on to further education. Don’t let the problems and handicaps you have as a result of your brain injury stop you from taking chances. The help and the support is there if you are able to go back to higher education. If you believe in yourself and you have family and friends that believe in you to, then I urge you to do it. Going to university improved my cognitive functions, my social skills and my confidence no end. It can do the same for you; all you have to do is work hard and believe that you can do it.

Thank you for reading, as ever. Sorry this was a bit later than I intended because of a laptop related disaster. I hope you will follow me on WordPress , if you want more updates and info on the blog and brain injury stuff in general then follow me on Twitter @ABIblogger. Thanks again and be well!

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. I have covered much of the initial issues that came up in the immediate aftermath of me suffering my injury. This post will be focusing on how a positive mindset can make all the difference to you as you move forward in your recovery.

I believe that the key is to assess where the limitations that have been placed on you make a difference and where they don’t. In my opinion, it is about allowing the situation to dictate certain elements of the way you live day to day because it has to. While at the same time, not allowing the injury to define who you are and what you can achieve in the grand scheme of things. Alright, so you may not be able to have a drink anymore, or play a certain sport that you enjoyed previously like rugby for instance, but going back to work? Going to university? Those are all achievable things, things that you can do with the right mindset.

ABI – The Inescapable Reality

We all know that as survivors of something like an ABI, we are affected everyday by the consequences of our injuries. Of course, we feel resentment and frustration towards something that is inescapable and that makes us feel marginalized when we look at those around us. There will be successes and failures on the road of recovery as there is for anyone but sometimes it can feel as though there is only failure. This post is to say to you that success, lasting success, can be achievable. A lot of successes depend very much on the way that you regard your injury when you approach potential opportunities and problems. Whether that is using your brain injury to get the things that you need, to channeling your frustration and anger into a constructive, or will you allow the injury to beat you? Will it go on to define who you are and what you are able to do for the rest of your life?

Accepting The Situation

It is only after many long stays at both ends of the spectrum between success and failure that the gains from the successes started to outweigh the losses of the failures. When I look back at my own experiences, it was out of a desire to live a life unaffected by brain injury that most of these failures seem to have stemmed from. Thinking I could do the same things as everyone else without any help, when the truth is I can’t. Or I can, but only with lots of help from loved ones and in a very well organised set of circumstances. Now I have finally decided to embrace my situation, not to hide from it or evade it, the successes are becoming more plentiful.

More recently, I have started to think in a more logical way regarding my ABI. As I have stated before, the after effects make us victims feel frustrated, angry and marginalized. We find ourselves asking “why me?” I have started to think though, that if the effects of the injury are here to stay, if the consequences of the ABI are going to be an ever present, shouldn’t we all try to find a way to turn these problems to our advantage?

What Do You Want!

I firmly believe that the majority of opportunities in life that are available for (for lack of a better word) “regular” people are accessible to people who have suffered from brain injuries. One thing that must be acknowledged is the amount of hard work that will go into accessing those openings. There is a lot of paperwork and bureaucracy to go through as well as the most problematic thing to overcome, difficult people in office jobs and positions of “power”. Seriously though, look at yourself, look at your situation and ask where do I want to be? What do I want to do? Do I want to go back to work, do I want get back into education, is there a particular job I want and so forth.

The key is, to set yourself a goal that you can work towards. Focusing your energy and applying yourself towards attaining that goal is not only a positive in terms of it helps to exercise your brain and improve its function (or it certainly did for me), but also it doesn’t allow you to fester on the things you have lost as you are focusing on something else. You have the knowledge that if you work for it you can achieve the same things as everyone else, which is a huge positive and helps drive you on.

Also, it is worth bearing in mind that while we currently live in a time where austerity is the word of the day, there is help out there. The important thing is to find resources who can offer help in guiding you toward the right kind of help that you may need. In the next couple of posts I will put up a few links that can help you get the right support to help you.

An Example

Pre-ABI I was weeks away from starting on my chosen university course. Something I had been looking forward to, as any nineteen year old does, with huge anticipation. To find post-ABI that I would have to wait at least another year before I could go was a real kick in the teeth. My neurologist told me that we would monitor my situation over the coming year and decide then, when it was easier to see what the long-term consequences of the injury would be. The thing was, while it was so frustrating knowing I would have to wait a full year before going to uni, the fact that I could still go motivated me more than anything else has ever done. I worked and worked, my father worked with the disabled students centre at my chosen university to ensure I would have all the support I needed. When the time came to be assessed again, my neurologist supported the idea of me going to uni as he believed it would benefit me in the long run (that is a very brief overview of the process of access to education, merely to talk about mindset, there will be more detailed information on this in the next post and over the coming weeks). I got to that point mostly from a determination not to allow my ABI to define who I was going to become. It shouldn’t define us! We can be what we want to be and achieve what we want to achieve, same as anyone else!

You Can Do It To!

I will say to you again that most of the things that people without head injuries do in life are accessible and achievable for ABI victims. The importance of a positive mindset cannot be underestimated, especially when combined with determination and a strong work ethic. Next week I will be sharing my experiences of accessing education and sharing some of the ways that helped me to become more independent. I will also share some of the servicesI had access to, without which, I probably wouldn’t have completed my degree.

Thanks again for those that have read today. As always, I am open to contact and constructive criticism if you want. I am available on Twitter @ABIblogger or you can follow and comment on here. Thanks again and be well!

I realise that I am posting on a day other than my usual Monday and Thursday slots. Today, however, is a day that needs to be brought to the forefront of discussion. Today is the 10th of October and is marked in the calendar as World Mental Health Day, a day to raise awareness of and broaden the dialogue surrounding mental health and to hopefully address the negative stigmas attached to it.

Mental Health In The Context Of The UK Population

The truth is we must understand mental health problems before we can answer the question “HOW do we address it?” The truth is that, statistically, one in four people are likely to have issues regarding mental health over the next year. Most of those people will, again statistically, be young people. So what we are saying is that approximately 25% of the UK population is likely to have mental health issues over the next year, the majority of them being young people. A statistic even more alarming, though, is that 28% of UK residents would be unwilling to talk about issues regarding their mental health and the mental health of others. That is extremely alarming to me. Nearly one third of the British population is unwilling to talk about something one quarter of the population has – there is something terribly wrong there!

So, what does that mean? So many people will be and are going through mental health issues in our country. It is predicted that, by the year 2020, major depression will be the second most common health issue in Britain behind heart disease. It appears we are approaching a mental health epidemic in Britain and someone seriously needs to sit up and ask the question, when are we going to talk about this?

What Is It Like To Suffer From Mental Health Problems?

I can only put mental health into a context where I can understand and relate to it. After suffering from an Acquired Brain Injury (ABI) I have suffered terribly with depression. I have seen councilors and neuropsychologists to help me with my issues; I have tried more holistic methods such as mindfulness thinking and meditation classes. Finally, six years after the ABI, I am at a place where I am reasonably well balanced in terms of my mental health.

I am not fully balanced though. It is something like walking a tightrope, lose your balance ever so slightly and you can take a massive fall (It is lucky I always have the safety net of my family there to catch me). People are never aware of mental health, not really. It is that problem and a perception that people with depression are having a bad day or feeling sorry for themselves that hampers the potential discourse surrounding the subject. For anyone that doesn’t understand or has never experienced issues with something like depression or the myriad of other mental health issues, the paragraph below (in a very dark manner) will explain what it felt like for me to suffer day in, day out, with depression.

“Depression is cancer of the soul. I still see a neuropsychologist regularly to try and fight against the parasite that riddles my brain; stabbing at my insecurities, whispering nasty, vindictive things about who I am and the way I am, the voices that don’t want me to succeed and seems to hold the positive voices as hostage with a gag stuffed down their throat. It is the thing that locks all the positive thoughts and emotions; optimism, love, hope, self-belief, confidence in a cell with no windows.” (Written by myself approximately two years ago).

Media Representation Of Mental Health Problems

We often see in mainstream media such as the news, film and TV a representation of mental health issues which depicts the extreme repercussions and effects they have on people’s lives. People so depressed they are self-harming or committing suicide, murderers who were schizophrenic or bipolar. We see the extreme consequences of these illnesses but what is never addressed are the issues everyday people are having regarding mental illness and mental health problems – that the person you sit opposite to in the office may be on medication for a mental health issue that they live with, manage as best they can and live with negative feelings and thought patterns every day rarely occurs to most of us and gets very little air time in terms of media coverage as it is not shocking enough. What is shocking in my opinion, though, is the number of people in our lives who are likely to be suffering from this kind of issue.

What becomes more frustrating for people in that situation is the blasé nature in which objective social commentators seem to address their condition. As we move forwards into the future, the Internet plays an increasingly larger role in the influence it has on the way that we are thinking. Let’s not beat around the bush, the media we consume plays a large role in influencing the way the general population thinks. What has really started to upset me is the emergence of what I like to call “the sickening meme” (two examples of these can be found at the end of this paragraph. Maybe I’m negative but hey!). With social networking playing an ever-expanding part in people’s lives, both socially and professionally, it allows people to show their creativity and promote their creative works to a large audience of people. Now this, I am all for. However, it becomes increasingly frustrating when people address issues and over simplify them. In doing this, creating a meme with a nice picture and a sickening quote that overly simplifies an extremely complex issue. While you are being creative and your work is very impressive, you are not part of the solution, you are part of the problem, in over-simplifying the discourse that surrounds a complex issue. This helps to minimalise the discussion around issues of mental health as it makes it seem as though the solution to issues such as depression and mental health conditions are easy ones when THEY ARE NOT. I realise that memes such as these are not intended specifically for people with mental health problems, but people suffering from those problems see these pieces of creativity and they feel worse, they feel isolated, as they start to ask the question, “Why can’t I pull myself together?” It makes them feel more and more as though they are failures.

Sickening Meme 1: Dancing In The Rain

Sickening meme 2: Wind In The Sails

Mental Health In Relation To ABI

For people with ABI’s, the reasoning behind depression post-injury can be so varied because an ABI changes so much in our lives; our physical abilities, our cognitive abilities and mental capacities, it can stop you from finding, keeping, even being able to work, it can change personality traits, it can make it so that relationships cannot be developed or maintained, it can ruin careers, ruin lives! There is some academic thought that it could come from a biological reaction to the trauma itself – I do not necessarily agree. I think if we look at all of those things I listed previously, what they have in common is loss. I think the depression post brain injury is us mourning our loss and adjusting to a new sense of self and realising that we have to be someone new and find new ways of doing regular things to be able to get by and live a regular life.

Ways ABI Patients Can Regain Control

Fighting depression post-ABI can be a difficult task. It is incredibly important though as something like depression can be as debilitating as a physical disability. The key is to find ways to fight those negative voices that can be so influential and powerful in our brains. So now I am going to list a few key ways (some I may have mentioned in previous posts) that helps me fight depression after my injury.

Exercise – A simple one but very effective. Doing something as simple as going for a brisk walk for an hour each day will produce endorphins, opiate like neurotransmitters (chemicals that pass on signals from one neuron to the next) that come from the pituitary gland and spinal chord, and other parts of your brain and nervous system. Endorphins are often produced during periods of stress, fear and pain and mostly interact with the receptors of cells found in regions of the brain that suppress pain as well as controlling our emotional levels. The release of endorphins can give your mood a real lift, leading to the term “the runner’s high”, meaning a feeling of euphoria post-exercise.

Holistic Methods – These methods can often be scoffed at but I found them to be very effective. Practices such as the one I used, mindfulness meditation, is aimed at really paying attention to where you are, in the present and being aware of your thoughts and where they lead. As well as this, mindfulness if done in a specific location can allow you to really be aware of the natural world as it is. The intention is to really come to terms with yourself and your presence in this world and can be really effective in instilling a positive thought process, which will improve your mental health and your wellbeing in general.

Recording & Celebrating Your Successes – I have talked in previous posts about targeting small achievable goals. One of the things I am not sure I put enough emphasis on was recording those goals and your victories. When I was recovering from my ABI, I made a diary to record the things I had achieved. This enables you in darker times, when the negative thoughts get overwhelming, to look back over your successes and see what YOU have achieved. The things that YOU did. It was all your work! What’s more celebrate those achievements even if they are small ones. To give yourself credit give you confidence and self esteem which will allow you to press on and go for bigger things. Those two things also play a big part in overcoming depression. If you do enough things and tell yourself enough “I ACHIEVED THAT” or “LOOK AT ALL THE THINGS I HAVE DONE”, that self affirmation is the kind of thing that allows the positive voices to shout over the negative ones.

The point I have tried to make with this post is that, while we now have one day to bring attention to mental health, there are people suffering with those kinds of issues every single day. One day or one week even, does not seem to be enough in my eyes. Why aren’t there, for example, trained social workers in schools? The person you went to talk to about issues such as depression when I was at school was a PE teacher who also taught PSHE. I have to ask, if young people are suffering with these issues as badly as recent studies suggest, WHY AREN’T WE DOING ANYTHING ABOUT IT??? Until we are all on the same page with regards to mental health problems and the kind of things that are required to overcome them such as:

Easy access to trained councilors

More education in schools

a kinder and more accurate portrayal of mental health patients in the media as well as a less polarized depiction of the severity of mental health issues in general society.

Finally, everyone being able to open up to each other and talk openly about how we feel.

Until we can provide this, then we are still going to be in the same place in the year 2020, asking ourselves how have this generation been allowed to get to this position? The middle of a mental health epidemic!

Now, I hope that this has been helpful. I think that these issues are all one that need to be addressed and talked about. I realise that some (maybe many) may disagree with what I am saying and my opinions on this subject. I have not written this as an inflammatory gesture, these are merely my opinions on the subject. If anyone has any criticism or issue with what I have written, don’t hesitate to contact me on Twitter (@ABIblogger) or by email: lifeafterbraininjuryblogchat@gmail.com.

My name is Tom; I am 26 years old and the survivor of an acquired brain injury. On the last post, I spent time stressing the importance of setting goals throughout an ABI recovery. Whether those are simple, short term goals or a more long term, complex goal, they both play an important role in building confidence within us (the patients), it allows you (the carer) to be able to see tangible progress and gives us both the incentive to keep going in what is an adverse situation. Finally, perhaps most importantly, stimulating the brain contributes significantly to establishing and building new pathways to avoid the old damaged ones that don’t work so well anymore, and improving cognitive functions. I believe that there were some things that perhaps I didn’t cover as well as I could have when talking about rewiring the brain, in particular, specific examples of what I did to aid the rewiring process. So I will dive into this a little deeper today.

Assess The Situation

In the last post, I’m unsure whether I made it clear, the idea of goal setting is important, however it should not be undertaken immediately upon the patients return. There is a period of time where both carer and patient should spend time assessing their position, what are your targets? What do you want? What do you need? These questions need to be asked and answers firmly established, between both parties, before any goals are set. Both patient and carer need to be on the same wavelength to ensure they are both working towards the same thing. If there is a miscommunication as to what the desired outcome is, it only has the potential to cause problems in your relationship.

The concept of taking your time for things to happen is something I worked out early. In my opinion, the sooner people directly involved in situations regarding head injuries grasp this concept the smoother things will go. Time is not necessarily the enemy either. When the patient arrives home, I believe that a period of time, allowing them to test their strength (in terms of their brain power: what they can/can’t do, where they struggle, what is still strong, what causes them distress) are all key things to learn when you are aiding an ABI recovery.

It becomes even more important to emphasise the importance of taking time in the recovery process when you deeply consider the idea of brain cells and synapses repairing themselves. I’ve tried to think of an appropriate analogy and this is the best I could come up with; think of an old battered road that has been damaged. So the local council decides to build a new road, a bypass so that the battered road doesn’t have to be used. Building that bypass will take time, effort and resources. As is the case when aiming your anger at public services, it doesn’t matter how angry you get, how much you complain or how much of inconvenience it is, it will only get done in its own time and all the complaining in the world wont make a difference. The repair process of cells multiplying and attaching to the right places and making the right connections is a long and tiresome process (believe me!), you can shout and scream at the process but it wont proceed any faster as a result. Everyone is entitled to moments of despair, anger self-loathing and self pity, I’ve certainly had those moments, but it can get better. You just have to be persistent, patient and determined.

Play to Strengths and Weaknesses

All of the above information is intended to help you tailor a recovery to the patients needs. This was the method our family used: learn my strengths and weaknesses and tailor the recovery to them. This section of today’s upload will give you a few for-instances that have significantly contributed to progress in my recovery. Once you know what causes a patient distress, you can avoid situations that directly involve that cause. An example from my experience; I suffered greatly from anxiety when it came to crowds, and loud noises. As a result my parents did all they could to avoid this environment when I was out with them.

Learning this kind of information will allow you to tailor a patient’s environment, activities and daily routine in a way that will ultimately benefit them. In particular, identifying activities where a patient is strong and tailoring the recovery around those strengths can ultimately help them rewire their brain and strengthen the aspects where they are not strong, build these new roads. An example for you; when I left to go to university, even after a year of trying, I was still having a great deal of trouble with reading. While I recognized the words that were on the page, the problem I was having was with the thinking that was required in imagining the pictures that the words created, so in essence, using my brain for two simultaneous activities. The way that I overcame this obstacle was by reading comic books. A friend of mine gave me a copy of Watchmen (by Alan Moore). Being presented with a visual representation of the characters and only having to deal with dialogue in speech bubbles allowed me to strengthen, not necessarily my reading ability in the strictest sense, but strengthened my brain in the way a body builder lifts weights in a gym. As time went on, I regained my ability to read (and also obtained a love for the medium of comic books and graphic novels).

I also would say that the success I had in further education was partly down to attending a course that suited my situation regarding my cognitive abilities. My degree course was 100% coursework based with no exams. Following the improvement I had seen in my reading after the discovery of comic books, reading and writing weren’t too much of a problem. It was committing things to memory that was (and still is) a problem. The course I did, was all essays or creative work which, again, allowed me to work my brain; build up some strength again and endurance. By the time I progressed into the second year of my course, my brain had been tested significantly and strengthened by those tests.

If there Is one thing I would take from my own experiences regarding the rewiring of the brain, it would be that the brain is a muscle, use it! I realise that this is something of a cliché but it is the best I could come up with. The more you work the brain, at the same time ensuring you do not neglect the essentials such as plenty of rest, good diet and exercise, the stronger you physically, and the brain cognitively, will get over time. It was only when I went back for the second year of university (something that had to be very thoroughly discussed and assessed to see if it was a sensible thing for me at the time) could I say that I felt as though things were improving for me, and that about two years. It does take time, but ambitions are achievable and progress can be made.

Thank you for reading. Please follow me on WordPress to keep up to date with my blog work. Also for anyone wanting to, I am on Twitter and accessible on there, my name is @ABIblogger, and I do my best to respond to those who make the effort to get in touch. Thanks again for reading, keep going and stay strong!

My name is Tom, I am 26 years old and I am the survivor of an Acquired Brain Injury.

The last update, as well as the next few, will be devoted to the importance of having a strategy, a game plan, and things to aim at throughout an ABI recovery. Having targets to aim for, throughout the time I was sidelined by my injury only increased my determination that I was not going to allow the injury to define my future. Even if the targets do not seem that big, the little victories should not be underestimated. Those little wins give us encouragement and hope and give us the determination to carry on fighting what is a very difficult battle to have to fight, day-in day-out.

Start Small

As I said in my introduction, little wins are important. After a brain injury, we as patients are coming to terms with a new sense of self; there are things that do not work the same way anymore, things we can no longer do, things we don’t understand the same way anymore to name just a few. These huge changes in the way a mind works can, and trust me I’ve been there, be devastating to ones confidence and self esteem. You start to believe that you are stupid and that the changes are the effect of something you have done wrong, a mistake you have made. The worst thing that could happen to an ABI patient is for them to just give up on themselves and on life in general.

The key to avoiding this would be to slowly build their confidence again. Attempt small achievable tasks that can be worked towards. The saying “Rome wasn’t built in a day” could not be more relevant here. While certain pathways have no doubt been damaged or even destroyed by the injury, the brain is an incredible thing; it attempts to create new pathways to try and counter the damage that has been done (according to what I have been told anyway). In a metaphorical sense, over the years that follow an ABI, the brain will be in a process of attempting to rewire itself, so it can be used to its maximum capacity. A good example based on my experience was an issue with balance. Shortly after leaving hospital, it became clear that maintaining my balance while walking was clearly something I was having trouble with. So this became one of my first challenges: make sure I can get around the house properly. So not long after leaving hospital, the only way I could get up and down the stairs in my house was for my Dad to be stood in front of me, with me holding onto his shoulders to keep my balance. As time went on, we went a step further with me holding onto the bannister with one hand while my Dad supported me around the waist. Then, after that, it was for me to walk down the stairs holding onto both of the bannisters, with my dad a step beneath me, ready to catch me if I fell (hopefully). I then had to go down the stairs just using one bannister, with my dad still below me ready to catch me (even more hopefully!). Finally, It was time to attempt walking down the stairs unsupported, with my family waiting at the bottom (expecting me to crash and burn, no doubt).

I didn’t crash and burn though. It had taken me a month to get to the stage where I only had to use the bannister. I know that the process was very slow, but when I finally achieved my goal, walking up and down the stairs unaided (and without having to take ten minutes to process the method) the feeling of it was fantastic. I was so proud to have achieved, what any normal person would’ve called, an easy feat. It was those kind of moments and expanding on those little victories that allowed me to build up the confidence to think up an overall game plan, a long-term goal.

Keep A Long Term Goal In Mind

This is the difficulty of recovering from an ABI. You can never stay static. Or at least, that’s what we found. Maybe I should rephrase that, it’s INADVISABLE to stay static. Each day, we found that there was a way for me to be stimulated in some way; whether that was simply by watching a film and trying to follow the plot and character lines, or by trying to do something as simple as boil an egg and make a cup of tea for breakfast. All of these things were contributing to rewiring those damaged pathways I spoke about in the first section.

However, what I found throughout my recovery was that it was also important to have an, overall, larger goal, something that those little victories were moving towards. The reason I believe that this part of the recovery (laying out a long term goal) was key, was because it made those little victories all the more significant because they were moving towards something bigger, it gave those little victories all the more importance, and finally it gave me a hugely increased incentive to achieve those little victories.

My goal, was a very large one, to be deemed fit by my neurologist to go to university (what I was due to be doing anyway if it hadn’t been for the bloody injury!). I realise that this goal may not be suitable for all of you reading this, however it purely depends on the situation. It requires some serious assessment of both what the patient wants and needs and finding an appropriate target that will meet those requirements. The key is finding the balance to make the target achievable. I dread to think what my state of mind and my moral would’ve been had my doctor told me that I could not go to university. That is the danger you are faced with when selecting that long-term target: if the result is failure, it will be hugely demoralizing to the patient. I cannot tell you anything else because it would be a lie and my aim in this blog is to give you the uncensored truth of life after an ABI, and this is one of those truths.

If, however, you can find the right target and the patient achieves it, the positives and benefits can be overwhelming. When I went to university, it made my brain work as I had to live independently (cook my own meals, get to class on time, wash my clothes), as well as this it stimulated my brain from an academic standpoint, improved my social skills and improved my mental stamina. In my opinion, my brain was forced to rewire itself quicker due to an adapt or perish type mentality I had to adopt. Had I not been able to attend university, my life would have gone down a drastically different route.

(N.B. A massive thank you to Southampton Solent University and in particular, Access Solent. Access Solent provided me with all the support required for disabled students to succeed in terms of accommodation, note-takers, recording equipment, and regular academic mentoring sessions to ensure I was on task, as well as counseling sessions to help me with my emotional problems while I attended. So to say I did it on my own would be lie, without my family and Access Solent I would not have achieved any of the things I did. There are people out there who want to help you. It is merely a case of doing your research, approaching the right people and not taking no for an answer!)

Thanks for reading! I hope you have either enjoyed this chapter of my story or gained something constructive from it. If you want to hear more of my story then follow me here on WordPress or I am also available on Twitter, my handle is @ABIblogger. Thanks everyone and keep going!